WPI UK XMRV testing/study

I was diagnosed as Moderate to Severe ME in 2004.
Am I correct in thinking that some of those included in the XMRV UK tests do not have ME/CFS ?
They are perhaps partners parents etc.!
If so, how would we know what percentage were actually ME/CFS sufferers. This could also affect the final analysis.
To those who have already tested at Ashford - Do we have to confirm we have the illness?
Maybe I have got this all wrong - happens these days.
Tricia - confused in N Oxfordshire.

I was diagnosed as Moderate to Severe ME in 2004.
Am I correct in thinking that some of those included in the XMRV UK tests do not have ME/CFS ?
They are perhaps partners parents etc.!

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Hi Tricia,

Yes, you are right. Some family and household members are being tested as well.

If so, how would we know what percentage were actually ME/CFS sufferers. This could also affect the final analysis.

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One of the two aims of the study is to prove that the rate of XMRV infection is not 'Zero' in the U.K. The second aim is to prove that an independent lab can find XMRV, if they follow the WPI instructions.

To those who have already tested at Ashford - Do we have to confirm we have the illness?

Adam people who have requested a home draw haven't been contacted yet according to how the e-mail reads.

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Thanks MaryB. It's tough waiting for this. It feels like the last chance saloon to me. I'm 47 and had this damn thing for 14 years. The last year I've had a downturn overall. I'd just like to give it name other than CFS!

Hi everyone. Just caught up with this. I haven't had an email either but have had all the previous ones and at the outset said that I almost certainly would need a home draw as I would likely be too far to travel to a centre.

Just out of interest which is the nearest place to Penzance being provided this time (that's the far west of Cornwall)? I always thought it could be Bristol but I haven't heard that place mentioned so maybe even further?

I thought the draws for the WPI UK study were completed in March and April? At least I remember a lot of talk about people from the UK being signed up to give blood? This was in the weeks following the second and third negative studies. Are these two separate issues or was the study delayed?

It was my impression that the UK study, or at least the blood-draw stage, had concluded? Any UK people out there--is this all the same thing? Or two different things, maybe the talk from months earlier referred to some study they were doing that was more informal?

I thought the draws for the WPI UK study were completed in March and April? At least I remember a lot of talk about people from the UK being signed up to give blood? This was in the weeks following the second and third negative studies. Are these two separate issues or was the study delayed?

It was my impression that the UK study, or at least the blood-draw stage, had concluded? Any UK people out there--is this all the same thing? Or two different things, maybe the talk from months earlier referred to some study they were doing that was more informal?

TC!

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Only the first 50 samples (out of 200) were taken, then when they were trying to schedule the next lot of draws the Icelandic Volcanoe eruption happened and everything got put on hold...

There's isn't much to tell yet polly. I believe Ed is in the country with is wife to oversee the testing process. They still haven't finalized the locations. I had notice you hadn't been around much, and I was going to PM you when some important news develops.

There's isn't much to tell yet polly. I believe Ed is in the country with is wife to oversee the testing process. They still haven't finalized the locations. I had notice you hadn't been around much, and I was going to PM you when some important news develops.

Have you registered to the support site/forum: http://www.xmrvweb.me.uk/index.html? They're in contact with Ed from PSI, and it maybe a good idea to rearrange a home visit for you when you return from your hols. They will cross reference their checklist to confirm you're in the study.